West Region
Day of Dravet
Saturday, June 21, 2025
Point Defiance Zoo & Aquarium (Tacoma, WA)
Event Information and Schedule
Saturday June 21:
Day of Dravet Workshop 9 am – 4 pm
- We will be in the private Education Center which can be accessed directly from the parking lot.
- Breakfast and lunch will be provided.
- The agenda/speakers for each event are not set yet, but it will be a mix of presentations about Dravet syndrome (genetics, treatment options, research, current and potential future clinical trials) and how to get involved in the DSF community. Presenters will be DSF staff, medical professionals, industry representatives and other community members. It is a great chance to ask questions about things you may have heard about and wanted to understand more.
- There will also be plenty of time for connecting with other families. It is a great opportunity to meet other caregivers from your area and share local/state resources that are helpful to each other.
- Except for the Sibling Camp participants, there will NOT be admission provided to the zoo/aquarium on Saturday.
Saturday June 21 (Evening):
Dinner/Family Activities
We hope to be able to provide an evening dinner event through a sponsorship, but this is not confirmed yet.
Sunday June 22:
Family Activity (TBD)
We hope to be able to plan a fun activity for our families to participate in on Sunday. Stay tuned for details!
Sibling Camp
- While the workshop is taking place, any siblings aged 4-18 have the opportunity to participate in our sibling camp at no additional charge.
- After breakfast with the family, siblings will gather in a room nearby where they will spend some time getting to know each other and talking about what it is like to be Dravet sibling. Then after lunch they will get to enjoy the zoo/aquarium together.
- We will have plenty of adult volunteers to make this a special experience for them and keep them safe.
- If you have a sibling that is a teen or adult that would be interested in helping with younger siblings, we would love to have them help!
- Registration info for sibling camp will be sent out to all families that registered for each workshop as the date gets closer.
Hotel Information
We have a room block available at a discounted rate of $209 per night. There are rooms with one king bed or two queen beds.
The last day to reserve a room in the block is May 20, or possibly sooner if the block fills up fast. We can try to add more rooms if available, but may not be able to get the same rate, so please reserve your room early.
Rate Details:
- All guest rooms are subject to applicable state and local taxes
- Credit card required to guarantee booking
- Any cancellations most occur at least 48 hours prior to arrival
- Parking is discounted to $18/night
How to make a reservation:
To reserve a room online, click here. If you choose to call the hotel, tell them you are with the Dravet Syndrome event.
Frequently Asked Questions
Am I required to attend all of the events?
No! Your registration is for the Day of Dravet workshop on Saturday. The rest of the events are optional. However, you do need to attend the Saturday evening dinner event to receive the tickets for the Sunday activity.
Can my adult/child with Dravet syndrome stay in the room for the workshop?
Yes! This session is very informal, so it’s fine for the entire family to be in the room. We will have some activities in the back area that may help to keep them entertained (and hopefully some volunteers), but it will be your responsibility to determine whether they are creating a distraction for others. We encourage all siblings to participate in Sibling Camp!
Do I have to stay at the hotel with the room block?
No! We know many local families will not even need a hotel. If you do and would prefer to stay somewhere else, you’re welcome to do that.
What if we registered, but can no longer attend?
Please email Shannon if you need to cancel your registration.
